Think it through:
what ethical principles are involved?
can we decide which principles are most important?

Come to a decision.

Reflect on your decision.

Note that even if we are all rational, we might still disagree with
each other about what to do. Then we need to consider who has the
right to make the decision.

Ethical Principles.

There are many ethical principles.
e.g. a woman has a right to control what happens to her body
we should respect life
we should do no harm to others
we should help others
there should be justice in the distribution of resources

Some principles are more general than others. So some principles
are special cases of more general ones. For instance, the right to
control what happens to one's body is a special case of the principle of
autonomy, the right to control one's own life.

Hébert identifies 3 main general principles:
Autonomy, Beneficence, and Justice.
There may be other principles which are not special cases of these,
e.g. respecting life.

We can generally all agree to general principles, such as autonomy and
beneficence. The disagreement comes over cases where the principles
conflict, e.g., in abortion right, autonomy conflicts with beneficence.

If a principle covers a case, it creates a duty.
For example, it a person wishes to do something you disagree with,
you have a duty to respect her autonomy.

However, duties can be divided into two kinds:
"Prima facie" and "Absolute"

A prima facie duty is something you should do if there are no stronger
reasons for doing something different. Prima facie duties can be
trumped by other moral considerations.

An absolute duty is something you should do no matter what. Nothing
can trump an absolute duty. (There is some dispute about whether
any absolute duties exist.)

Rights and Duties
If a person has a right to X, then she must get X (other things being
equal.)
If a person has a duty to do Y, then she must do Y (other things being
equal).

Not all right and wrong can be expressed in terms of rights or duties.

But some good actions are not duties. Someone can go above and
beyond the call of duty. I can be kind to someone I don't like even
though I may have no moral duty to do so.

The fact that a person has a right to do Y does not mean that Y is good.
Giving people the rights to decide on their own can mean giving them the
right to make mistakes and do wrong. For example, we might give people
the right to refuse life saving treatment even if we think that it is wrong
to refuse such treatment.

We should distinguish between law and morality. Moral rights and
duties are different from legal rights and duties. For example, you
might have a moral duty to keep a promise to a friend, but such promises
are rarely enforceable by law.

Autonomy

Autonomy is the ability to control one's own life. In order to do
this, one needs information, powers of reasoning (mental competence) and
ability to express one's desires. (Ability to move one's body and
resources to do what one wants are useful, but maybe not essential for
autonomy).

Problem Cases:
Parents refusing treatment for their children
Can parents control their children's lives? What if the
children disagree with parents and want the treatment?

Teenagers and children refusing treatment (without their parents'
agreement).

Mentally ill patients refusing treatment.
Not all people with mental disorders are incompetent (e.g. people
with anxiety, phobias, or sometimes, severe mental illnesses when the treatment
at issue is not related to their illness, and even when it is related.)

Competency:
Does the patient understand the decision being made? Can
the patient understand the consequences of her actions?

No universal standard for competency

Standards for competency should depend on decision being made

Even severely mentally ill patients can refuse treatment unless
they are a danger to themselves or others.

when we take a holistic view of patients, role of HCPs becomes less
narrowly defined. E.g., hospice care.

Choosing the Best Criteria for Determining When Death Has Occurred

Traditional Criteria of Death (Whole Body):
Physicians used signs of life such as a feeling for a pulse, listening
for breathing, holding a mirror before the nose to test for condensation,
and looking to see if the pupils are fixed.

In the 18th and 19th centuries , there were macabre tales
of "corpses" reviving during funerals and exhumed skeletons found to have
clawed at coffin lids. In 1882 an undertaker names Kirchbaum attached periscopes
to coffins so that a person who woke up after being buried might signal
for help.

The brain has 3 general anatomic/functional divisions:

the cerebrum ("higher brain"), with its outer shell
called the cortex.

The cerebrum has primary control of consciousness, thought,
memory and feeling.

the cerebellum, which coordinates voluntary movements
and maintains bodily equilibrium.

the brainstem ("lower brain").

The brainstem has control of spontaneous vegetative functions
such as swallowing, yawning, and sleep-wake cycles. It controls respiration,
which maintains the correct levels of carbon dioxide and oxygen.

The Development of Medical Technology: Life-support
machines, such as those supporting heart-lung operation, were developed
in 1950s and 1960s.

An artificial respirator can be used to compensate for
the inability of the thoracic muscles to fill the lungs with air.

The heart can pump blood without external control from
the brain. An intact heart can continue to beat despite loss of brain function.
This can continue for only a limited time (2-10 days for adults, longer
for babies) when the brain has entirely ceased functioning. At present,
no machine can take place of the heart except for a limited time and in
limited circumstances.

When brainstem functions remain, but the major components
of the cortex are irreversibly destroyed, the patient is usually in what
is called a persistent vegetative state. Such persons can exhibit
spontaneous involuntary movements such as yawns or facial grimaces, their
eyes may be open and they may be capable of breathing without assistance.
But they have no awareness of their environment. They can survive months
or years without a respirator.

In 1959, the concept of Brain Death was first described
in the medical literature.

In 1968, an ad hoc committee at Harvard Medical School
developed the Harvard criteria of brain death, requiring loss of
virtually all brain activity. Complete certainty of irreversibility.

In 1981, the President's Commission for the Study of
Ethical Problems wrote a report on criteria for death. The Commission
regards only whole brain non-functioning as meeting the criteria
of death.

Commission: The use of respirators takes away the
significance of respiration and circulation for the diagnosis of death.

Higher Brain criteria: consciousness, thought and
feeling are primarily located in the cerebrum, especially the neocortex.
It is possible to lose these functions while the rest of the brain keeps
on working. The higher brain definition regards this as compatible with
death.

Higher Brain criteria are supported by the "Personhood
argument": Personhood consists in the complex of activities (or in
the capacities to engage in them) such as thinking, reasoning, feeling,
and human intercourse. Those who advocate definitions of death related
to the loss of these characteristics often link them to higher brain definitions.
Personhood ends with the irreversible loss of these functions.

Accepting the Higher Brain criterion might have the implication
that severely senile patients and the severely retarded were no longer
persons. It has the implication that Karen Quinlan, who has been removed
from the respirator that supported her breathing for 5 years, and breathes
independently and spontaneously, is just as dead as a corpse. The Commission
rejected this conclusion and the implication that such patients could be
buried or treated as dead persons.

A further problem with this criterion is that current
neurophysiology and medical technique cannot translate it into a clear
measurable standard. It is not known where consciousness and cognition
reside. There seem to be substantial interconnections with the brainstem.
Even when it is known what parts of the brain are responsible for aspects
of consciousness, their cessation cannot be assessed with certainty.

The Case of Karen Quinlan

In 1975, Karen Quinlan was 21. She
had recently left home against her adoptive parent's wishes, and moved
in with 2 male roommates. She was a free spirit, wild and reckless, taking
illegal drugs. Heroine, methadone, cocaine were alleged.

On April 15, she stopped breathing
after a few drinks at a bar. She was resuscitated. A bottle of Valium was
found in her purse, and she had been dieting or maybe fasting. The combination
of this with alcohol stopped her breathing. She had irreversible brain
damage. She was on a respirator to keep her breathing, and prevent aspiration
of vomit into her lungs.

When the respirator forced air into
her lungs she would sometimes choke and sit bold upright with her arms
flung outward and her eyes open and wild, appearing to her parents as if
she were in pain. She was put on a more powerful respirator, the MA-1,
which filled her lungs more, and required a tracheotomy, to which Karen's
mother agreed.

Karen had slow wave EEG, not flat.
She would sometimes seem to laugh or cry. Her eyes moved in different random
directions. She was not brain dead according to NJ law. She was in a PVS.
Over the next 5 months her muscles contracted and became rigid. Her weight
dropped drastically. She was nourished by an intravenous feeding tube,
and then a nasogastric feeding tube, after 5 months. Her head writhed and
she often vomited.

Karen had twice said to her family
that if anything terrible happened to her, she did not want to be kept
alive as a vegetable on machines. The family decided to remove the respirator.
The simplest thing to do would have been to obtain guardianship of Karen
and have her moved to another hospital, where the respirator could have
been disconnected. Instead their lawyer, 30 years old and inexperienced,
Paul Armstrong, went immediately to the issue of disconnecting the respirator.
He based his argument on the right to privacy.

The NJ Supreme Court heard the case
in November 1975 and decided in January 1976, after two months of deliberation.
They found in favor of the Quinlans, on the ground of the right to privacy.
They appointed her father, Joseph Quinlan, as her guardian, to make the
medical decision she would have made.

Karen Quinlan was weaned from the respirator
by May 1976. She did not die until June 13, 1986.

The Case of Nancy Cruzan and the Right to Die

On January 11, 1983, Nancy, age 24, lost control of her
car in Missouri, was thrown 35 feet, and landed face down in a water-filled
ditch. Paramedics arrived and found her heart stopped. She was resuscitated,
but had been anoxic for maybe 15 minutes. She was in a PVS.

She remained in this state for 7 years, costing the state
of Missouri $112,000 a year. She was kept alive by a feeding tube: she
could breath on her own.

Parents Joe and Joyce Cruzan sought legal permission to
disconnect the feeding tube. The Missouri Supreme Court held that the state
had an interest in preserving human life, regardless of the quality of
life. Before support could be withdrawn from an incompetent patient, there
must be clear and convincing evidence of the patient's wishes.

3 levels of evidence in court:

preponderance of evidence,

clear and convincing, and

beyond a reasonable doubt.

All the evidence that Nancy would have refused treatment
was vague and unreliable recollections of parents and friends.

This went to the US Supreme Court in 1990. The Court found
that the Constitution gives Americans a "liberty interest" to be free of
unwanted medical support. The Court also found that withdrawing a feeding
tube was no different from withdrawing any other kind of life-sustaining
medical support.

This was the first decision by the U.S. Supreme Court
to explicitly recognize the rights of dying patients.

Then friends came forward, who had known her under her
married name, Nancy Davis, and they said she had said she would refuse
treatment. This was taken to be clear and convincing evidence. Her feeding
tube was removed on December 14, 1990, and she died.

Children and Death

Children have some understanding and misunderstanding of
death.

Often their misunderstanding is due to parents finding
it difficult to talk to their children about death. Often parents will
use metaphors rather than direct language, and this confuses children.

Parents often misinterpret their children's understanding
of death, because they find it difficult to talk to their children about
it.

Childhood experiences of death can affect how they later
think about death as adults.

Many children's games are concerned with death.

Babies and Infants have no or very little understanding.

The Progress in Children's Understanding of Death

Age 3-5

Death as temporary, sleep, separation,
living in a different place. Very curious about death. May think it cruel
of God to take a person or pet, or for us to bury or burn them.

Age 5-9

Death is the complete loss of all
life functions, universal and irreversible. Often think of Death as a person
who will come for us, who we try to escape from.

9- adult

Death as inevitable. Start to theorize
about religion, the nature of death, and life after death. Death as an
abstraction, darkness, nothingness, transition.

Helping Children with Bereavement

1. Develop and maintain an open communication pattern
with children.

2. Give children the opportunity to choose attending the
funeral.

3. Ask what the child is thinking and feeling; don't assume
that we know what the death means to him or her.

4. Encourage the expression of feeling.

5. Provide convincing reassurance that there will always
be someone to love and look after the child.

6. Children at special risk may need professional counseling.

Dying Children

In the past parents and doctors often did not tell terminally
ill and seriously ill children that their life was at risk.

But children generally know that something is seriously
wrong. They are made uncomfortable about it through adults' discomfort
with it. It may lead them to think that adults don't really care.

Levels of knowledge of illness, without being told by
adults:

1. "It" was a serious illness.

2. Names and side effects of drugs.

3. Purposes of treatments and procedures.

4. The disease was a series of relapses and remissions.
Medicines don't always work.

5. The disease was terminal. Death is approaching, and
suffering will end.

Not telling a child about the illness does not reduce
child's anxiety. Children want to know what is happening to them. Home
or hospice care is generally psychologically easier than a hospital stay.

Children, like adults, can use denial as a way of coping
with their emotions. Dying young children can experience separation anxiety.
Older children can experience mutilation anxiety from medical treatments.
Terminally ill adolescents are often bitter and depressed.

Dying children know that those around them are unhappy
about their illness, and will sometimes try to protect those people from
further pain, by hiding symptoms or worries.

What are the rights of sick children?

Many treatments are painful and distressing, and children
don't like them. Hospital life can be lonely and upsetting.

Do they have a right to be free as possible from pain?

Do children have the right to refuse treatment?

Should standards of competency of children be different
from that of adults? Should they be assumed competent unless proven incompetent?

The Human Genome Project and Biotechnology

1953: Watson and Crick describe the molecular structure
of the genetic material: the double helix, and the pairing of the two sets
of nucleic acids, A to T and G to C.

1956: Tijo and Levan found that normal human beings have
46 chromosomes

1968: Caspersson and Zech invent a process for identifying
chromosomes.

1971: Indian microbiologist, Ananda Chakrabarty at GE,
applied to the US Patents and Trademarks Office for a patent on a genetically
engineered organism designed to consume oil spills on oceans. PTO refused.
Chakrabarty and GE appealed and won. PTO appealed to US Supreme Court.

1973: First human gene mapping workshop held in New Haven,
CT.

Cohen and Boyer take DNA from two unrelated organisms
that could not mate in nature, and recombine them to make a third organism.

1980: US Supreme Court, by a 5-4 vote, grant a patent
on the first genetically engineered life form.

1983: Ralph Binster at U Penn Vetinary School inserted
human growth hormone genes into mouse embryos. They grew twice as fast
and twice as big as any other mouse. These supermice passed the growth
hormone gene onto their offspring.

1984: Scientists fused together embryo cells from a goat
and a sheep, and placed the fused embryo into a surrogate animal who gave
birth to a sheep-goat.

1988: US Dept of Energy and National Institutes of Health
join up to create the Human Genome Project. NIH concentrates on gene mapping,
DOE on gene sequencing.

1997: Ian Wilmut announces birth of a sheep called Dolly,
the first cloned mammal.

Keith Campbell reported the birth of a sheep called Polly,
cloned from enhanced fetal sheep cells, who contains a human gene.

The biotech company Nextran is testing the efficacy of
using transgenic pig livers outside the body to help treat patients with
acute liver failure. CEO Marvin Miller estimates the commercial value of
these transgenic pig livers to be as high as $18,000 each.

Boston company Organogenesis can take a few cells from
a human foreskin and manufacture four acres of skin.

Mooney and Martin are working on growing women's breasts
in the lab, which could be implanted into a woman's chest.

Dr. Anthony Atala, director of tissue engineering at Harvard
Medical School, is growing a human bladder in a glass jar.

Eugenics

The term 'eugenics' was invented by Francis Galton, Charles
Darwin's cousin.

"I wish very much that the wrong people could be prevented
entirely from breeding; and when the evil nature of these people is sufficiently
flagrant, this should be done. Criminals should be sterilized and feeble-minded
persons forbidden to leave offspring behind them... the emphasis should
be laid on getting desirable people to breed."

Letter from Theodore Roosevelt, 1913.

Eugenics was supported by many intellectuals in the first
decades of the century. It was partly a response to the massive immigration
wave, especially the Irish, the Jews, and the Italians, which increased
the number of city slums and unionizing.

In 1921, in Good Housekeeping, Calvin Coolidge
wrote that biological laws tell us that certain divergent peoples will
not mix or blend. He concluded that the Nordics propagate themselves successfully,
"while with other races, the outcome shows deterioration on both sides."

Genetic Screening

In 1992, in London, a woman's egg was fertilized with
her husband's sperm, in vitro, but before implantation in her womb, it
was screened for cystic fibrosis.

Genetic Therapy

By mid-1980s, the possibility of carrying out effective
somatic cell gene therapy on human beings became a realistic goal.
This will not affect the future children of the person.

First human somatic gene therapy was in 1990; Dr. French
Anderson and his team at NIH treated a young girl suffering from ADA deficiency,
"bubble-boy disease." White blood cells were taken from her body and the
gene that codes for adenosine deaminase was introduced into the cells,
which were then reintroduced back into her body using a modified animal
retrovirus as the vehicle of transmission. The experiment was controversial,
since some other geneticists said that it was flawed and was not proof
that the genetic therapy had been effective.

Gene therapy, involving gametes, fertilized eggs, or early
embryos, leads to germ-line transformation. The transgene becomes
heritably transmitted to future generations. It will probably become common
in 15-20 years. It is this sort of therapy that leads to the greatest worries.

Three sorts of ethical concern about germ-line therapy:

The "slippery slope" argument, that it will lead to "positive
eugenics", the systematic improvement or perfection of the human genome.

By eliminating some deleterious genes we will lose some
important genetic variation that may have a future survival value to the
species.

This gene therapy may cause even more serious maladies
in future generations.

We can try to draw a distinction between curing a malady
(negative gene therapy) and enhancing a normal person (positive gene therapy).
There is controversy over whether there is an objective way to draw this
distinction. There may be some clear cases on each side of the dividing
line, but there is a large gray area with many controversial cases.

Can we give an objective general definition of a malady?
This is much debated. Can we give an objective scientific definition of
normal health? Or is the definition arbitrary, or dependent on cultural
or subjective factors?

Some say yes. E.g. Charles Culver: "A person has a malady
if and only if he has a condition, other than his rational beliefs and
desires, such that he is suffering or at increased risk of suffering a
harm or evil (death, pain, disability, loss of freedom or opportunity,
loss of pleasure) in the absence of a distinct sustaining cause."

Culver admits that this definition is a little vague,
but does not see this as a major problem, and says it is unavoidable for
any definition.

Others point to such definitions and say that terms like
"rational," "disability," "freedom," and "pleasure" are very subjective.

Whether or not there is an objective definition, we can
also debate whether positive genetic therapy is wrong.

Compare germ-line therapy to the old eugenics. It would
be voluntarily chosen by prospective parents. Could it ever be mandated
by law? Even if not enforced by law, could there be social pressures which
would make people feel that it was their responsibility to get genetic
therapy?

Edward Berger says that germ-line therapy "would only
be justified in cases of severe maladies, where there is no less radical
way of achieving the same goal. Among the class of less radical procedures
would be somatic cell gene therapy or any other nongenetic therapy" such
as genetic screening. Once genetic screening is sophisticated enough, we
can always use it instead of germ-line therapy to eliminate defects.

However, germ-line therapy would still be necessary for
enhancing an embryo.